Tag Archives: g-tube

As a vegetarian, I’ve known about the wonders of lentils for a while. Not only are they delicious (especially in a soup or stew), but they also provide a powerhouse of nutrition high in protein, calorie dense and balanced out with a healthy dose of carbs. Armed with this knowledge, I decided to try a recipe for Jenna’s homemade formula using lentils. Here’s what I came up with:

Preparation is easy. I simmer the soup mix & quinoa in the 4 cups of coconut milk. While that’s simmering, I add all other ingredients to my Vita Mix blender and blend well. I add the mixture from the stove, blend very well (sometimes adding more water to achieve the desired consistency to pass through the feeding pump tubing) and pour into storage jars.

Nutritional info:

2651 calories (30 cal/oz)

112 grams of fat (38% of total calories)

90 grams of protein (14% of total calories)

344 grams of carbohydrates (51% of total calories)

Good to know when making these calculations:

Fats have 9 calories per gram

Proteins & carbs have 4 calories per gram

I’d like to get the protein percentage a little higher and will probably do so by using more of the lentil soup mix the next time. BUT, even though the percentage of protein for the overall mixture is not as high as I’d like, I calculated what she consumes in a day and found that she’s still getting the 18 g/day recommended for her age and weight.

I’ve been getting several requests for information on where to find reliable nutrition information for creating homemade blended formula for tube feedings. Below are several sources I use with a brief description of each as provided by The Oley Foundation in their monthly newsletter.

The government’s nutrition website provided as a service of the National Agricultural Library of the U.S. Department of Agriculture (USDA). You can find links to USDA MyPyramid or Dietary Guidelines for Americans. The site includes a “Health Issues” page and links for shopping, cooking & meal planning.

Maintained by the Department of Nutrition at the Harvard School of Public Health and designed to help you achieve the healthiest diet possible by providing timely information on diet and nutrition. Colorful & easy to navigate.

The American Dietetic Association offers “Food & Nutrition Information You Can Trust.” Click the link “for the public” and you’ll find numerous resources and nutrition education materials. Site includes a BMI calculator and videos on a variety of food & nutrition topics.

Provided by the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.) Includes current news on topics related to parenteral and enteral nutrition with information for patients and caregivers.

Registry of federally and privately supported clinical trials conducted worldwide, offered through the National Institutes of Health (NIH). There are currently around 100 studies on parenteral nutrition open to enrollment & 180 for enteral nutrition.

Additionally, one of my favorite books is Raising Vegetarian Children, which is just full of charts with nutritional requirements for children and tons of other useful information.

If you have a favorite reliable source, please share it in the comments! I always love to hear what you have to say!

I found this article in Kiwi magazine from Traci Paige Johnson, and I just had to share her three ideas with you! They’re fabulous! From this month’s edition:

FOOD ADVENTURER – Turn your child into a superhero (it’s better if you say FOOOOOOD ADVENTUREEEERRRR! in a superhero voice) by having her don special goggles, a cape, or whatever will lighten the mood as she takes her first bite of an unfamiliar dish. Kids are more apt to try a new food if they’re happy and relaxed.

THE REVIEWS ARE IN – Turn your dinner table into a talk show, ,with your child as the guest commentator. Hold up a pretend microphone and interview him: What does this new food look and smell like? What does it taste like? Does he give it a thumbs-up? A thumbs-down? A thumb to the side? Keep a chart with stickers to show how each new food was reviewed on each “episode” of your show.

YOUR LUCKY DAY – Bring one die to the table. Each person takes a turn rolling it: Whatever he rolls determines how many bites of the new food he has to try. Even if your child rolls a one, that’s okay: Try the food again tomorrow and hope for a six! The more times he tastes a food, the more his palate will get used to it – and start to like it.

I think Jenna would think all of these are fun, and trying all three will mix it up a little bit. I plan to start using these ideas ASAP. We’ll see how it goes. Fingers crossed!

I think an update is long overdue. Somehow, the hours of the day always seem to get away from me, and even though I’ve been meaning to post, the words just keep piling up in my head and never quite make it to the computer. Thanks for being so forgiving!

Jenna celebrated her birthday and now proudly tells anyone she can that she’s FIVE! It’s amazing what a difference one number can make. When she learned her dentist appointment was approaching (routine exam & cleaning), she started crying and whining but then caught herself. She took a deep breath and said softly to herself, “I’m five now. I can do this.” and she DID! With no crying or freaking out. I was so proud of her.

She’s now 44″ tall and weighs in at 43 pounds. She’s right smack on the “average” line on growth charts now. Quite an improvement from not even being on the curve! The blenderized formula is going phenomenally well, and we will soon transition to including her overnight feeding in this switch. At that point, all of her feeding will be with homemade formula. Yay! My main hurdle for this is step is finding a way to keep the calorie count up, but make the formula thin enough to feed through her pump overnight. We still run into trouble with the pump when we try to push homemade formula through. Our other option is to move all of her feeds to when she’s awake, but this means 5 feedings during the day. When you consider the fact that she wakes at 8 am, naps from 1-5, and goes to bed at 8 pm, there aren’t a lot of waking hours left to squeeze 5 feedings in! She’s awake a total of 8 hours and there are a lot of other things she (and we!) would like to do besides sitting still for a feeding. *Sigh* We’ll figure something out!

On the homemade formula side of things, I’ve started branching out to more than just my basic recipe that I posted before. It started when I was in a pinch one morning. She needed fed, and I didn’t have all the ingredients for my recipe (sorry to disappoint you if you thought I was perfectly organized all the time – ha!). This led to me looking around at what I had and essentially throwing things together. That morning, it was some oatmeal, fruit, yogurt, kefir and hemp butter. I realized that I would be thrilled if she ate that by mouth, so it should be fine to feed her by tube! Since then, I occasionally just “throw” things together that are handy. Having the core knowledge of fat, protein and calorie content helps a lot. I just try to throw in things that are balanced with the goodness she needs. My base recipe is still my staple, and I usually simply tweak that a little with different fruit & veggie additions, but every now and then, I mix it up with a few leftovers from dinner the night before, or something I have handy in the pantry. We haven’t had any problems with her tolerating anything (I still stay away from cow’s milk, since it upset her stomach in the past). It’s nice to have the added flexibility, and she seems to be maintaining or gaining weight just fine.

We’re still not having much improvement with oral eating. She nibbles, and she’ll occasionally try new things, but there aren’t too many calories being consumed that way. Suggesting to her that eating by mouth will mean no more tubes and pump is only met with extreme distress. She WANTS the tube to feed her! She NEVER wants her “special button” to be taken out. I think part of this is due to her thinking that taking it out permanently will hurt, but I think most of it is simply due to the fact that it’s all she has ever known. It’s kind of a part of her. Taking it out is the “unknown” and the unknown is usually scary. Our one bit of leverage is that she HATES having a new gastronomy button placed every 4 months. With a passion. She’s a little more receptive to the idea that eating by mouth means that we don’t have to keep changing the button, we just refrain from mentioning that there would be a one-last-time removal of the button along with that. The bottom line is that I think she just has to do this in her own time, when she is ready. I think we just have to stop trying to push our schedule. Always easier said than done.

We have basically hibernated through the winter and are feeling a little spring-feverish. We’ve worked on PT and OT here at home (though not as rigidly as if we had attended appointments), and we see improvements in lots of areas. She still really struggles with holding anything to write or draw with for an extended time. She fatigues very easily, and gets frustrated when she can’t make straight lines. Because she has no measurable grip strength, her lines all look very shaky and uneven. It’s a lot of work for her to control her muscles and a pencil or crayon. It’s hard for me to see her get so frustrated. She LOVES anything art-related, and loves to work at her easel, but she quickly fatigues from standing in one place. I finally found my way to an IKEA store (I had never been in one before) and found a Mammut stool that is PERFECT for her to work on at her easel. Sitting is hard for her to do for very long, too, but this makes it easy for her to stand for a while and then sit for a while.

Side note: I thought she might be struggling with some hyperactivity issues because she constantly shifts and fidgets when she’s sitting. She frequently slides one leg off the chair so that one knee remains on the chair while the other leg stands. I asked our therapist about this and she adamantly said that it’s NOT hyperactivity, it’s incredibly low core strength. She said that sitting still in a chair requires much more core strength than most people think and it’s very wearing for CP kiddos. So, really, ANY position for extended periods of time is tough for her, since she has low muscle tone everywhere.

Her sensory processing issues are much, MUCH better overall. She still hates loud noises and will cover her ears and complain, but at least she doesn’t immediately meltdown or scream in terror. She is still very sensitive to bright sunlight, but as long as we always have her sunglasses along, she manages without melting down. She has much more tolerance for touching a variety of textures and will now even play with her “slime” or in sand without freaking out and resisting. She still has definite sensory seeking or sensory avoidant days, but we’re getting used to her signals and learning how to adjust to what she needs. We were having a lot of trouble with her settling for sleep, but then remembered her weighted blanket (thanks, Jenn!). It makes a world of difference, and she’s been sleeping with it every night. Her other big hurdle was her oral fixation and the tendency to put fingers and objects in her mouth. Her chewy necklace has really helped with this. I actually ordered the Kid Companion necklace for her, and she hated it. Boo. She said it was “too hard.” She loves that the teether is more “squishy” and has more give when she bites. The good news is, I kept the lanyard from the Kid Companion and used it to solve our necklace problem. Perfect! She does get a few weird looks when she’s wearing a teether in public, but who really cares?

She struggles a lot with shortness of breath and wheezing. It’s frustrating for her when she’s around other kids, because she wants to run and chase like they are, but when they are just getting wound up, she is exhausted. She frequently has to announce that she needs to rest and sits down, gasping for breath while the other kids continue obliviously. It’s hard for me to watch because I feel sad for her. Our pulmonologist appointment is coming up in May, so we’ll see what he has to say at that point.

We thought we had escaped the dreaded crud of cold and flu season this year, but yesterday she started with something the doctor thinks is viral. She’s completely congested, running a fever (101 this morning), and coughs whenever she lays down, which makes it really hard to sleep. We’re pushing lots of fluids, trying to make sure she gets lots of rest and starting Rynatan to hopefully dry up all the mucus before it moves to her lungs. We’ve had a lot of success over the last year if we start Rynatan at the first sign of any cold/flu congestion. It’s such a relief to have something that helps us dodge pneumonia and hospitalization.

We’re heading to FL for a couple of weeks in just a couple of weeks. The sunshine and warmth will be good for us all. Jenna’s uncle is getting married down there, and between a wedding, seeing her grandma and grandpa and the fact that we’re renting a PINK cottage, she couldn’t be more excited.

I’ll try to do better at posting more ideas for home therapy and maybe a recipe or two now and then. Until then, if you have any questions about where we’re at or what we’re doing, please feel free to ask in the comments or email me at psychmamma1 {at} gmail.com.

I wish so much that we could return to the days when you could call your doctor’s office and they would give you some ideas of things to try at home. Of course, they’d also tell you what to watch for that would mean you needed to see the doctor, but they weren’t afraid to give you advice over the phone. Maybe they were even trying to prevent too many people from coming in the office for simple things that didn’t really require a doctor.

Now, you can pretty much bet that when you call the doctor’s office, a nurse might talk to you a little bit but odds are fairly good that they’re going to conclude by saying, “We really need to see her in the office.” As a parent, you obviously want to do what’s best for your kiddo, so, even if you have some doubts about the necessity of a doctor visit, you take them in “just to be safe.” If you’re like me, there’s also at least a little bit of the worry that if you DON’T take them in, either a.) you’ll be branded a “bad” parent by the doctor’s office or b.) the worst case scenario will pan out & your kiddo will suffer unnecessarily. Ugh. I’m sure that this is a result of our tendency as a nation to scream “law suit” at any little thing, and I can hardly blame the doctors for wanting to protect themselves. I think it’s yet another case where our abuse of a system that was meant to protect us is actually ending up hurting us more than it helped. Just my opinion. What’s the fix? I wish I knew.

I’m thinking about all of this today because we’ve been having some issues with Jenna’s g-tube feedings. Last week, I started having trouble pushing her formula in via syringe & g-tube. It would go in smoothly for a bit, then suddenly I wasn’t able to push the syringe any further at all. Here are the factors I considered:

It was a new homemade food recipe that seemed to be thicker. Watered it down – still had the problem.

It only happened when using the homemade formula (not with packaged formula in feeding pump). Tried running it through blender again – still had the problem.

Her button was due for a change. Changed that – still had problem.

Now, today, Jenna actually complained that it “hurt inside” her tummy when I pushed harder on the syringe. She’s never complained of discomfort before. She didn’t seem in any kind of serious distress, and as soon as I quit pushing, she said it stopped hurting. Still…….my mama brain went into overdrive, considering all the possibilities and worst case scenarios. Her stomach was soft, not hot to the touch and not distended. I got out the stethoscope to listen, and all gut sounds seemed normal. Her button site looks fine and the button still turns freely/easily. Hmmm…. Here’s where I start wondering about calling the doctor. The problem is, I’m absolutely certain they’ll tell me to bring her in so they can see her gastronomy site in person, the office is a 6-hour round trip journey, an office visit is expensive, and I’m just not positive it’s necessary. *sigh*

Can you here my brain spinning? Seriously. My brain is almost always thinking about Jenna stuff. The thought train goes something like this (buckle in – it’s a bumpy ride in my brain):

therapy: are we doing enough at home? what else do i need to be working on? how are her fine motor skills doing? *did she poop yet today* how are her gross motor skills doing? why is she toe-walking again? how do i need to address that? her grip strength doesn’t seem to be getting any better. she’s having a sensory-seeking day today. how is her core strength and balance? what can i get her interested in eating orally today? what kind of incentives will help encourage her? how much should i push oral feeds? how many calories has she had today? how much water did she drink today? *is she wheezing?* i need to get the stethoscope out and listen to her lungs. did i give her her meds yet? does she need an inhaler dose? are her retractions a little deeper today? when was the last time we changed her button?……

You get the idea. It NEVER. ENDS. When something comes up like it did today (and the past week), my brain goes into hyperdrive. It makes me weary. And I worry.

I came up with a plan while in the shower this afternoon. I always feel better when I have a plan, and the shower weirdly seems like a good place for making one. I decided to try blending this batch of food AGAIN, warming it a bit more and thinning it a little more. We’re almost through this batch and I’ll make a new one tomorrow or the next day. I’ll go back to the recipe I know we didn’t have a problem with and see if that makes a difference. After searching online a bit, I also learned that when I feel that resistance in the syringe, I should try pulling back a little bit and then pushing again. We’ll give that a shot as well. If, after all those changes, we still have trouble, I’ll call the doc. OF COURSE, if she complains more of pain or I notice any other gut symptoms we always watch for, I’ll call the doc immediately.

Whew. It feels good to have a plan, but my brain is still whirring and I’m still worrying. At least I slowed it down a little bit. I think.

How about you? When do you call the doctor? How long do you feel is OK to wait? Do you experience the same frustrations with calling the doctor’s office? And is your brain going a thousand miles an hour, too??

Update: We haven’t been having any additional problems, so I’m assuming the problem was with the thickness of that batch of food. Yay! Glad we didn’t make a 6 hour trip to and from the doctor.

These might not be popcorn-type movies, but I recently borrowed two movies from The Oley Foundation that I thought I’d share with you.

Tube Feedings are Mealtimes, Too!

The “Get Permission” Approach to Mealtime and Oral Motor Treatment

Both are done by Marsha Dunn Klein, MEd, OTR/L of Mealtime Notions, and both are good. I, personally, got the most out of the “Get Permission” Approach. I appreciated the reminder to watch for Jenna’s cues and let her take the lead in feeding. It’s so easy to slip into worrying about how many mL I push, on what schedule and at what rate, and forget that there’s a kiddo involved who should be having at least some control over her eating. Especially if we want to be moving her toward oral feeding independence!

Keep in mind that these are clinical presentations, not Oscar nominee potential, and glean whatever information you can. Plus? It’s a free resource! WIN!

You can find these two DVDs and others at The Oley Foundation under “Resources” – Videos & DVDs, or follow the highlighted link.